Janepedia is reader-supported. When you buy through links on my site, I may earn a commission at no extra cost to you.
Anytime I see “autism” attached to something, I automatically assume I’m going to feel insulted, because 99 percent of the time, I am. Most of the resources/articles/blog posts are written by allistic people.
I fear the language “person with autism”, because it’s demeaning and hurtful and feels so burdening…because I sometimes feel like a burden, too, and the part of me that feels like such a burden? It terrifies me. It terrifies me, because I know there are some things I simply cannot do, no matter how hard I try. Sometimes I take a little longer to respond to a question, because not only must I process the question into my head, but I must also figure out how to get my response out. Sometimes, I understand a question internally, but I cannot figure out how to outwardly respond.
I fear the language “person with autism”, because it infers my autism and I are two separate entities, but…they’re not. I am my autism, and my autism is what makes up me—much like the annoying hair that grows on my legs and arms, much like the brown coloring in my irises, much like the melanin that determines the color of my skin. My autism is me, and I am my autism, and when someone tells me I am not autistic, but a “personal with autism”, or calls another autistic person such, I grow shaky and anxious. It’s a triggering phrase to me, because I know what it’s like to have people try to remove the autism from an autistic person—to force autistics into uncomfortable situations and try certain technologies/practices to get the stimming to stop.
I fear the language “person with autism”, because the phrase reminds me of my own version of hell: a place in which autistic people truly are the devil’s spawn and must be stripped of their autistic tendencies.
And then I’m expected to be fine with the language, because allistic people tell me how they’re not talking about me and they didn’t mean it like that and I’m not like their child, because I can do this or that, or maybe I’d never do ___, because their child wouldn’t disrespect them in that way.
And I’m supposed to be okay with it, because I don’t understand their situation and have never experienced similar pain, but…haven’t I experienced slightly worse? I don’t like going into the game of “Whose pain is worse?”, but if you want to go there, I can go there. I don’t speak out against certain anti-autism tactics more because I feel like it. I’m not against strapping autistic kids down because I have no clue what it feels like. If you’ve done any of that to your autistic child, I am like your child whether you like it or not.
And I’m not against your child—I’m trying my best to advocate for children like yours, because it sucks to be in a situation where you feel like no one understands you, or you cannot communicate with people in your own language.
I’m going into triggering situations sometimes in hopes that maybe, just maybe, I may be able to help make something a little better.
And that’s what a lot of other autistics are also trying to do.
But then we’re faced with harmful language, and it makes it hard. We’re knocked down by allistic people, because what right do we have, as autistic people, to advocate for our own kind? We’re knocked down by allistic people, because what do we know about autism?
There’s a communication barrier, and there is a lack-of-respect-for-the-autistic-community barrier. And what I have personally noticed, both through my own life and through autistic community-based forums, is that—contrary to popular belief—autistic people are doing a lot more in terms of meeting halfway, whereas allistic people are still in their closed-minded little bubbles. And until allistic people are willing to do a little more in terms of meeting halfway—because autistic brains can only do so much—there is always going to be a divide.
Perhaps, instead of using your allistic perspective of autism, you could consult actually autistic people who have lived all their years in a world created for neurotypical people.
/endrant written for no one in particular
I’m back on talking about my autism, with a whole new bout of determination and motivation. Skip the platitudes, thanks.